Saturday, July 31, 2010

I 'met' Amanda through the Patients for a Moment blog carnival. Amanda has been living with Primary Sclerosing Cholangitis, or PSC for the last 18 years. She found out two months ago that her disease has progressed to the point where she needs a liver transplant NOW.

Despite her very serious health crisis, she is taking the time to raise money for LifeBanc through their annual Run and Walk for Life event on August 14, 2010.

If it weren’t for LifeBanc educating people on the importance of donation, I’d probably be waiting much longer to get healthy again. Since they educate people about the importance of registering and teach the public how to register as an organ/tissue donor in the first place, I’m not afraid.

In honor of whomever’s liver I will receive, I wanted to head up a team in LifeBanc’s annual Walk and Run for Life. While waiting for a liver and spending so much time going through testing, I hesitated on the idea, but I knew in my heart that this was meant to be. I am additionally hoping that I can give all of you - my friends, family, and community - an experience that will stay in our hearts and minds forever.

Depending on when my transplant takes place, I hope deeply in my heart to be there and thank each of you personally for supporting such a vital cause. I cannot express what your interest in this means to me.

Our team goal is $1000. What if each one of you asked everyone you knew for $1 and told them about the cause? (You can give donations on the website.) We’d definitely be on our way to being a success for LifeBanc!

ALL proceeds from the Gift of Life Walk support programming to educate the public about the need of organ and tissue donation. I’ve volunteered enough with them LifeBanc to know that without their selfless hours, we probably wouldn’t have a smooth, successful organ-sharing system.

Remember, organ and tissue donors and recipients are more than statistics or medical stories. They are our neighbors. They’re our community. With your help, LifeBanc is working to save and heal more lives by educating Northeast Ohio about donation and increasing those designating their wishes to donate the gift of life.

Friday, July 30, 2010

Yesterday, some friends asked me to share some of my tips and tricks for getting more emotionally balanced. I'm glad they asked me because I believe that the best way to reinforce knowledge is to turn around and share it with someone else. I felt so inspired helping my friends out that I decided I needed to turn my advice into a blog post that could benefit all my readers. So here they are, my habits for gaining emotional balance:

Understand the nature of emotions. We all want to be happy, which is our home base. But just like the weather changes from day to day, from hot to cold, from sunny to cloudy, so too do our feelings. The key here is knowing that difficult emotions will pass, just like rain clouds do across the sky. Just because you feel bad today doesn't mean you will feel bad tomorrow. So go with the flow, feel your feelings and then watch them fade away.

That said, if you find yourself stuck feeling the same emotion day after day, can't feel anything at all or find your feelings rapidly changing over the course of a day, it might be time to see your doctor or talk to a mental health professional.

Breathe. Breathing isn't something we have to think about doing, but have you ever noticed how your breathing changes when you feel stressed, upset or anxious? Focusing on taking a couple of full, deep breaths can often help you calm down and get focused.

You can train yourself to make this second nature. When ever a phone, door bell or electronic device rings, buzzes or makes a sound, use the sound as a cue to remind yourself to breathe deeply.

Have a mantra. Before I knew I had dysautonomia, I often had episodes where I all of a sudden didn't feel well. It was easy to get worked up and start thinking the worst about my situation, but this didn't help me cope very well. So one day I decided to repeat this phrase to myself whenever I had an episode: 'I am good, I am fine, I'm O.K.' With practice, this mantra helped get a handle on my symptoms and not let them reduce me to a quivering, helpless mess.

Choose a theme song. Nothing seems to cheer me up more than listening to my favorite music. So I took that concept one step further and decided that my life needed a theme song--a song that could pick me up, keep me motivated and remind me of what I am trying to get out of life. Click play below to hear my all-time favorite theme song...

Have fun every day. I devoted a whole post to this concept recently which you can find right here. Of all my daily strategies, I think having fun every day is the most important one. I believe that having fun makes life worth living, especially on those supercalifragilisticexpialidociously bad days.

Share your life with a pet. I honestly believe that pets are the only true source of unconditional love. All they want is your love and attention and in exchange they shower you with all the love and attention you could ever want. Can't have a pet where you live? Consider volunteering at your local animal shelter or befriending your neighbor's dog or cat.

Keep a daily path to happiness journal. Many people swear by the power of a gratitude journal, but I think I have found an even better way to get focused on the important things in life. At the beginning of every day, I write down what I want and my mantra for the day. At the end of each day, I write down the best highlight from my day.

So for example: I want to be a successful blogger. My mantra is Enjoy each moment. I enjoyed a good conversation with my husband during dinner.

All it takes is three sentences a day to keep me focused on my goals, in touch with sacred counsel and grateful for the good things in my life.

So what are the things that help you gain balance, perspective and focus in your life? Teach me something new by sharing your tips and tricks in a comment.

Thursday, July 29, 2010

Bittersweet best describes the experience of being a cancer survivor. Like the phoenix rising from the ashes, you can't escape getting burned on the transformative journey. The people that know this best are my fellow cancer survivors.

Let me introduce you to my friend Mary Carpenter. She's beaten breast cancer three times and has the double mastectomy scars to prove it. She expresses herself through her writing and poetry which she posts as notes on Facebook. I got tagged in her latest note and when I read this I knew I needed to share both her words and her artwork, with her permission, here on my blog.

I found that her words resonated with me and mirrored my own experience. But these themes of changes, growth, strength and resolve I think are universal to the struggle with any illness ... and to life in general.

Mary writes:

I have been a writer for a very long time. This is the poem I wrote the first time I was diagnosed with cancer. I remain defiant of cancer and embracing of life. I will not allow it to take from me all the good parts of who I am.Cancer will never touch those parts. I have continued to cherish the deepest parts of me and the strength of my amazing body through each of three cancer diagnoses. As dear Anna would say, "Cancer can bugger off!"

The Unexpected Tree

~by Mary E. Carpenter

Cancer is an illnessTo most I know –To me it is a treeFrom which goals and changes grow.

I didn’t ask for it –It didn’t ask for me,But somehow a seed was plantedAnd I became a branch upon the tree.

More stems are slowly growing –Along with leaves of vibrant green –Not the roots of cancer;But a strength that goes unseen.

It conquers all the illness –It risks and takes a chance!It reaches for survival,Not ready for the last dance.

It doesn’t care for vanity –The breast and hair can go.It understands the cancerDoesn’t know the resolve that it can sew.

The branches become bigger –The roots ever deep –Cancer can not reach the soulWhere fortitude does reap.

I hope you enjoyed this guest post as much as I did. If you have something you'd like to see posted on Oh My Aches and Pains!, please contact me.

Wednesday, July 28, 2010

@SelenaMKI - I parent: a cat that plays fetch, a cat named Hiss, a diluted calico that hides, a puppy that whines & a poodle that gets jealous. #fb

and

@SelenaMKI - In my defense, I didn't aim to have five pets. But the poodle wanted a brother & the Hiss just showed up in my backyard. #howlifeworks #fb

I have to say that I couldn't manage this brood without the help of Robert. Dad helps everyday and steps up and takes over when having this many pets gets to be too much on my bad days. And yes, Robert and I call each other Mom and Dad when we discuss our furry children and their needs (like breaking up fights, food, potty breaks and bedtime.)

I follow @FriendsofPaz on Twitter and Facebook. She is a photographer who donates her time at the South Los Angeles Animal Shelter taking pictures of the pets who need homes and posting them online. I 'talked' with her on Twitter about a week ago and asked her how she got started. As she filled me in on the details, a little voice inside my head said, "You can do that. You could volunteer. Taking pictures once a week at the Animal Shelter could be fibro-friendly."

She warned me that not all the animals get adopted and some of them are in bad shape, but I already knew that because I looked around when I adopted Bastet and Brunswick from the West Los Angeles Animal Shelter. I told her I just want to help increase these pets' chances of getting adopted. I just want to try and help.

So now that I am feeling better, I've decided to head over to the West Los Angeles Animal Shelter and talk to the volunteer coordinator this weekend about doing the same thing for them. I don't know if they'll take me up on my offer, but I sure hope they do. I'll give them a copy of all the pictures I take so they can post them on the shelter website, then I'll take the pictures home to post and tweet up a storm.

As with everything else in my life, I've recruited Robert to help and support me when I go to the shelter. I am hoping he can be a back up on the weekends I am not quite up to snuff. I'm also going to see if I can get my sis Cyndie in on the action too. (Hint, hint Cyndie!)

Helping shelter pets find new homes; that's how I want to start saving lives. Assembling a team to support my do-gooding is how I'll make doing it fibro-friendly.

Tuesday, July 27, 2010

I love 80's music, probably because I am old and that is the decade in which I reached adulthood. Which, of course makes me somewhere closer to middle age than I care to admit. Although I swear mentally I feel like I am still in my twenties, now just smarter, wiser and making fewer mistakes. As for my poor body, well it feels much closer to retirement age than my actual age.

I guess not having any kids makes this illusion possible. I don't have anyone reminding me that the 80's are no longer cool and neither am I...

So since I have been trying to follow the blogging theme of SAVE this month, I keep playing the English Beat song Save It For Later in my head. Weird thing is, I went to look up the lyrics for the song online and discovered this:

Two dozen other stupid reasons
Why we should suffer for this
Don't bother trying to explain them
Just hold my hand while I come to a decision on it.

Sooner or later
your legs give way, you hit the ground
Save it for later
don't run away and let me down.
Sooner or later
you'll hit the deck you'll get found out
Save it for later
don't runaway and let me down, you let me down.
You run away run away runaway runaway runaway runaway
And let me down.

Hmm, O.K., didn't realize until now how much this speaks to my life with chronic illness. This is how I would paraphrase it:

Don't bother trying to explain to me why I am suffering like this. Can't you see! My body has let me down and I have hit the ground. I've hit the deck and found out just how fragile I am. All I want is for you to just hold my hand; please don't runaway and let me down.

"... it was about turning from a teenager to someone in their 20s, and realizing that the effortless promise for your teenage years was not necessarily going to show (up). ...it was about being lost, about not really knowing your role in the world, trying to find your place in the world. ...you'd have all sorts of people telling you this, that, and the other, and advising you, and it didn't actually seem like they knew any better. So it was like keep your advice to yourself. Save it - for later."

So yeah, the infinite promise of my teenage years came crashing to a stop when I was diagnosed with cancer at age 22. I've found myself feeling lost more than once since then and I've had to reinvent myself several times. While it might be easier for someone else to actually see my issues, it's up to me to figure out my next move. So if you are deciding whether to give me advice or support, the safe bet is give me support.

Monday, July 26, 2010

I found a surprise as I was cleaning out my email in-box late last night. It came in the form of a bi-weekly email from Jenni at ChronicBabe. I love this little prayer and agree that it should be printed out and posted somewhere prominent so it can be read every day. I'm going to put in on my bathroom mirror, since I find myself in front often during the day.

I hope you enjoy this little prayer too!

THE KNOTS PRAYER

Dear God,

Please untie the knots that are in my mind, my heart and my life.

Remove the have nots,the can nots and the do notsthat I have in my mind.

Erase all the will nots and themight nots that may find a home in my heart .

Release me from the could notsand thewould notsthat obstruct my life.

And most of all, dear God,I ask that you remove from my mind, my heart and my lifeall the am notsthat I have allowed to hold me back ,especially the thought,that I am not good enough.

Amen.

~Author Known Only to God

Thanks once again to Jenni at ChronicBabe for sharing this in her bi-weekly Goodie Bag. You can get a Goodie Bag too by visiting ChronicBabe.com.

Sunday, July 25, 2010

They are not moments I like to think about, now that they are securely a part of my past. What am I talking about? The great big meltdown moments that have occurred in my life...

The First Time

The first major meltdown happened a month after I was diagnosed with leukemia. I was excited about my upcoming released from the hospital after a successful first course of chemotherapy that put my cancer into remission. While visiting me in my hospital room a day or two before that big day, my boyfriend broke up with me.

I was devastated.

The Second Time

It was eight months after I was diagnosed with type 2 diabetes, back in 1999. I was hellbent on managing my diabetes with diet and exercise only. Part of my treatment plan was seeing a dietitian for regular consultations. Those first eight months I obsessively watched every single piece of food I put in my mouth and religiously worked out at least three times a week. I got my blood sugars under excellent control, but could not succeed in losing a single pound.

Mentioning this to the dietitian, she replied, "I guess you must have a farmer body. You have to be moving for most of your day in order for you to lose weigh."

What the heck! Well, screw this then...

The Third Time

Talk about adding insult to injury. The trip-and-fall accident that put me on my journey with chronic pain and chronic fatigue happened while I was at work. Which meant my initial medical treatment didn't come from my own personal doctor, but a contracted occupational medicine clinic. Not only did they not help, the treatments they prescribed made my pain worse. Oh yeah, and when I reported that my pain was getting worse, not better, I was accused of not wanting to go back to work.

So after three weeks, when I was discharged from medical care and told I could go back to work--the medical staff totally ignoring, disregarding, and disbelieving my very real and very disabling pain--it felt like the last straw that broke the proverbial camel's back.

I was so despondent by the time I made it to my own doctor's office that I told him I couldn't take it anymore.

The Last Time

A former rheumatologist convinced me that I needed to treat my chronic Hepatitis C infection since he thought it was implicated in my fibromyalgia symptoms. I got enrolled into a clinical study in August 2007. About two weeks in, all hell broke loose. I developed multiple viral and bacterial infections: eye infection, double ear infections, sinus infection and severe upper respiratory infection.

A week later I was in the Emergency Room being evaluated for a possible heart attack.

Turns out, I was in bad shape due to a flare-up of my undiagnosed dysautonomia, with symptoms reaching a higher level of intensity. The symptoms made me feel so agitated that I honestly thought I was going to have to be sedated. After several unreturned calls to my rheumatologist, a staff member at the Cedars Sinai Chronic Pain and Fibromyalgia Program intervened on my behalf and got the doctor to call me back. He prescribed a beta-blocker that made a world of difference. But it was too late...

The Hepatitis C treatment, subsequent hospitalization and dysautonomia symptom overload left me bed-bound and facing a long three month climb back to my previous level of functioning.

A Saving Grace

So what helped me weather these storms and get to a better place? My saving grace can be summed up with the one amazing quote (thanks to my friend @sonjathegreat for posting this yesterday on Twitter):

“Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today.”

~Thich Nhat Hanh

Quite honestly, it is the hope that tomorrow will be a better day that has helped me get through all these times of emotional upheaval and illness. Hope helps with all the everyday setbacks, adversities and hardships too. I've come to rely on the fact that the promise of a better tomorrow makes all my misfortunes bearable.

My saving grace is that hope heals.

What is your saving grace? Share yours with me when you leave me some comment love...

Friday, July 23, 2010

Remember my recent post My Dream Job? Well it turns out that it got the attention of Nakia at the National Disability Institute. She sent me a very nice email which I want to share with you:

Hi Selena,I just read your blog post about (your) dream job. It's a dream that many Americans with Disabilities share, and an unfortunate reality that job placement for people with disabilities is sub par.I work for an organization called the National Disability Institute and we are holding a video contest this month where we are asking Americans with Disabilities to share their "American Dream". I think the narrative you created for that blog post would be a great entry.The website with all the information on the contest ishttp://dream.realeconomicimpact.org. You can also contact me directly if you have any questions.

Join NDI and the Real Economic Impact team on the Web!www.realeconomicimpact.org

So all I can think about is making a video. I have no idea where to start, but I have the whole weekend to start brainstorming...

And it goes without saying that you should think about submitting your own video too! I want you to join me in recording, saving and submitting a video to the Defining the New American Dream contest. Click the link below to get all the details:

Thursday, July 22, 2010

I can't tell you how much money I have spent out-of-pocket on alternative health care. I can't tell you because I haven't tracked it. I mention this because I really want to be able to demonstrate in dollar signs and numbers just how stupid I feel right now.

I have not always felt stupid about alternative medicine. On the contrary, I only started feeling stupid when I read the blog post Let Us All Praise Medical Woo. That post made me realized that 15 years ago I got suck into a branch of the healthcare system that appealed to my unmet medical needs, talked a good game, but ultimately delivered little in the way of health, care or results.

I shouldn't feel stupid. Even the Federal government has allocated money to alternative medicine via the National Center for Complementary and Alternative Medicine. Plus I am in good company. Turn out consumers spend $34 BILLION dollars out-of-pocket on things like acupuncture, therapeutic touch and nutritional supplements.

So earlier this year when I was still feeling like I wasn't getting sufficient treatment for my chronic pain and fatigue through traditional medicine, I turned to alternative healthcare again.

My search lead me to a chiropractor who said he could help my fibromyalgia. He certainly said all the right words and demonstrated a technique on me during the free consultation he offered that convinced me he knew what he was doing. Then we got to the nitty-gritty. He wanted me to pay him up front for 26 sessions up front, offering to bill my insurance so I could get reimbursed after each visit.

Convinced he could really help me, we started to figure out how to get the money together to pay him.

Then just before my first appointment, I badly twisted my ankle and wound up in a walking boot. I called to postpone my first appointment. Much to my surprise, he wouldn't let me cancel the appointment. He said to me, "Well you need to find someone to bring to you to your appointment. Call your family and friends." Taken aback, I told him I doubted I could find a ride but would call back if my situation changed.

After my phone call, he started calling me like he was a crazy person. Initially, he called me several times a day, hanging up, not leaving messages. After a few days, I left him a message letting him know I wouldn't be seeing him. Despite that message, it has been almost month now and he is still calling me several times a week.

His wholly unprofessional behavior gave me the impression that he had already spent the money I was going to give him, the money my husband and I painfully scraped together and really couldn't afford to give him in the first place.

Needless to say, I will never go back and see this doctor again. And in the process, I have decided that I am going to save myself the trouble of continuing to feeling stupid about alternative medicine. I'm giving up on alternative medicine and keeping my money in my pocket.

Wednesday, July 21, 2010

I should probably start by saying I am not a medical professional and this post does not constitute medical advice. That said, I am now going to comment on medical advice I got that turned out to be not so helpful and my own personal Internet research that provides an explanation why. Which means I've met up with Dr. Google again and my elicit affair continues...

So after my stomach virus, I went to the doctor because I was pretty sure I had pink eye. I figured it might be viral since the symptoms weren't too pronounced, but wanted a doctor to look at it anyway. I also decided to mention some issues I was having with ear stuffiness and nasal congestion as well and ask if I needed a different allergy medication.

This all necessitated a look down my throat and up my nose, after which the doctor exclaimed, "Hmm, you have some boogers."

Wow!

Much to my surprise, I did not know that the word booger was a medical term. I immediately felt like a little kid in the pediatrician's office. I mean, doctors have looked up my nose more times than I can remember during my adult years and yet no one has even mentioned my boogers until now.

Just to be clear, I know I have boogers, I just never thought they were medically relevant or worth mentioning. Needless to say, I felt completely embarrassed that my secret was out and being discussed to me by a doctor. After all, wasn't there a more dignified medical terms to use in place of the word booger?

The ensuing barrage of advice was all about booger eradication using nasal irrigation. I left with a recommendation for a specific device and instructions to use it twice a day. So I trotted off to the big chain pharmacy after my appointment to pick up prescriptions and the booger eradicator.

I came home, read the instructions and started using the nasal irrigator After using it for several day, I got lazy and stopped. Then a couple days later, I came down with a pretty nasty cold, a coincidence that after some consideration really wasn't one.

You see, I never knew that mucus, the building block of boogers, is actually a combination of powerful antimicrobial agents that combat viruses, bacteria and fungi. So when you wash mucus out of your nose and sinuses, you are leaving them vulnerable to attack, especially if you free some microbes from their mucus entrapment in the process. In fact, Dr. Talal Nsouli, former allergist to President Clinton and clinical professor at Georgetown University School of Medicine, found that regular daily use of nasal irrigation resulted in a 62% increase in recurrent sinus infection.

So I think clearing out my mucus set the stage for a full-blown viral infection, drastically reducing my own natural defenses against such an intruder. Which then made me wonder, did the doctor miss class the day they discussed mucus? More importantly, since she diagnosed a viral infection in my eye, was it really smart to suggest getting rid of my mucus when clearly I was having a microbe issue in the general area of my ears, nose and sinuses?

I've learned my lesson: mucus is a savior. Getting rid of it on a daily basis is just a bad idea. Nasal irrigation probably isn't such a good thing, despite what Dr. Oz said on Oprah, and if I am really bothered by mucus I should chose remedies that thin it out rather than aggressively wash it all away.

Once again, it is clear that my body knows what it is doing and I need to just get out of its way and let it do its job.

Oh, yeah, and doctors don't always know what they are talking about, especially when it comes to boogers.

Gotten any bad advice from a doctor lately? Did something come out of your doctor's mouth that really embarrassed you? Dish about it when you leave me a comment. Then check out the related articles for more information and a good laugh...

Tuesday, July 20, 2010

Let me start by saying that I chose the product advertisements I display on my blog very carefully and strive to only include products and services that I use myself. One of these items is the emWave® Personal Stress Reliever which was doctor recommended to help me manage my dysautonomia symptoms.

I endorse the emWave because:

It gives you feedback you can see and hear while you use the device, so you know if you are doing the exercise correctly.

Unlike a heart rate monitor, the emWave is based on the science of coherence, which goes beyond heart rate to measure heart rhythm: the time interval between heart beats.

Using the emWave helps you program your heart and nervous system to work harmoniously together for additive calming effects.

The benefits of the emWave have been scientifically studied and the results published in scholarly journals like Stress Medicine, American Journal of Cardiology, Preventive Cardiology,Journal of the American College of Cardiology, Integrative Physiological and Behavioral Science and Harvard Business Review.

Some of the benefits I have achieved using the emWave include increased ability to tolerate dysautonomia symptoms, stress reduction, enhanced emotional balance and a way to combat fibro-fog and cognitive symptoms.

I have a lot of confidence and trust in HeartMath, the company that sells the emWave, for the following reasons:

They offer a 30-day no risk guarantee.

They provide multiple resources to help you learn how to use your emWave, including online e-training, a weekly one hour telephone class and online forums. All this free training is in addition to the manual and Coherence Coach CD included in the packaging.

Anyone can subscribe to emWave Information List that provides periodic updates on using the emWave as well as tips, stories and much more (like free e-book downloads.)

Through the non-profit Institute of HeartMath, the company gives emWave devices to soldiers fighting in Afghanistan and Iraq to help them manage the intense stresses of active duty. This program helps combat post-traumatic stress disorder and other mental, emotional and physical suffering our troops endure as the result of their deployment in combat zones.

Right now, while the emWave is on sale, you absolutely cannot beat the price. Regularly selling for $199.00, FOR ONE WEEK ONLY the emWave is $119.40. That is an amazing 40% off.

But don't just take my word for it. As a writer, life coach and person living with fibromyalgia, Martha Beck endorses the use of the emWave as well:

"I'm fanatically interested in new technologies that apply what scientists are learning about the brain. One of my very favorites is a device from HeartMath, called an "emWave." It gives me feedback about the electromagnetic resonance coming from my heart and brain -- and while costing less than $200, does the job better than a "brain mapping" procedure for which I gladly paid $10,000. I use my emWave every day, and believe it's helping me become permanently calmer and more relaxed. I've been giving emWaves to all my friend, life coaches, and clients."

~Martha Beck is a life-coach, New York Times best selling author, columnist for O, the Oprah Magazine and featured on the website Know Fibro

Like Martha, I was extremely pleased with my purchase of the emWave at full price. So you'll be even happier when you get it for 40%. Using the link below to order your own emWave and support Oh My Aches and Pains! with your purchase.

Monday, July 19, 2010

I've hit a rough patch lately when it comes to my health. I didn't seem to have many viral illnesses over the winter months, which is somewhat unusual for me. Not that I am complaining, mind you. That said, it appears that all those viruses have been following me and have finally caught up to me now.

A few weeks back I had a horrible stomach virus. Since last Thursday, I've followed that up with a rip roaring upper respiratory infection.

After running fevers for the last three days, I reluctantly headed to Urgent Care Sunday to get checked out. After examining me and sending me for a chest x-ray, they decided that I had influenza. They pumped me up with some fluids and gave me some Tylenol on top of the ibuprofen I took for my fever and sent me on my way with a prescription for Tamiflu.

To be honest, I'm not sure I have the flu. Since I got back from the doctor's, I've been feeling better and so far no fever. I filled the prescription, but I suspect I have missed the critical 48 hour window to start taking it, so I am going to pass. I guess it's good to have it on hand in case I get the flu in the next 18 months.

What has me more worried is the trend I am experiencing of catching viral illnesses in the summer. Since 2007, I seem to be catching a cold every August. This year, it's been two viral illnesses in July. I always though summertime was my reprieve from getting sick, which is one of many reasons summer is my favorite time of year. But that seems to be changing...

Is this something other people have been noticing too? Or this is another associated condition with fibromyalgia and chronic fatigue syndrome?

Either way, I wish this trend would stop because I have a garden full of vegetables that need tending and I'll be damned if I am going to let all my hard work wither under the hot sun!

Friday, July 16, 2010

I admit that I have a weakness for memes, the quintessential blog writing prompt. So when I saw a tweet yesterday from the Problogger about completing this exercise, well I was all over it. So in this edition of Good Reads, I'm doing a bit of shameless self-promotion and showcasing some of my own blogs posts so you can get to know me better...

1) My first post

I started blogging at the now defunct AOL Journals and migrated my blog from there to Blogger in October 2008. I recently reprinted my first post from AOL journals dated January 2, 2006 here. But I should also highlight My Last 100 Days, the first post from my blog-a-day in the month of May challenge that I accepted back in 2009 from my good friend Cyndie. That challenge got me on the road to consistently blogging and made me into the blogger I am today. Thanks again Cyndie!

2) A post you enjoyed writing the most &3) A post which had a great discussion

I really had a lot of fun writing the post My Dream Job and it caused quite a stir. Seems readers actually thought I was writing about a real life temp agency for people with disabilities! The beginning of the post was a pure work of fiction, but I think it highlighted the real need for employment opportunities for persons with disabilities. I want to thank the folks over at Bloggers Unite for inspiring me to write this post for Empowering People with Disabilities Day.

(Addendum: I was invited by the National Disability Institute to use the post My Dream Job create a video and submit it to their American Dream Contest in July 2010. I blogged about the invitation in My Dream Job: Record, Save and Submit and you can view my video submission on YouTube here.)

4) A post on someone else’s blog that you wish you’d written

I'll let you in on a secret ... I am not so good about reading other people's blogs on a consistent basis. In fact, if anyone out there has a system they use to accomplish this, please let me in on your secret! That's why I volunteer to help out with hosting blog carnivals because you have to read the posts to write up a good carnival post.

This is how I found this post you are not. at the blog Moosh in Indy while helping out with the ChronicBabe blog carnival. I LOVE this post and so wish I could be inspired to write a post like this. You have to check it out and leave Moosh some comment love...

5) Your most helpful post &6) A post that you wish more people had read

Hands down, it has to be My Advice: Don't Get Cancer. It probably should come with the subtitle: Words of Wisdom from a Long-Term Cancer Survivor. I am proud of it because it is short, sweet and to-the-point with a kick of audacity and a big no duh! sprinkled in for good measure.

O.K., so I probably highlighted more than seven posts, but hey, they all are great representations of some of my best blogging. It goes without saying that I really enjoy the challenge of blogging and feel I get better and better with each post I publish. Which reminds me once again that there are some great benefits to working on living my best life despite chronic illness.

I challenge you to complete this meme too! Leave me a comment with the link to your Seven Posts to Savor and I promise to come by to read it and leave you some comment love. And let me know if you want to throw down the gauntlet and participate in a blog-a-day for a month challenge too.

Thursday, July 15, 2010

If I hadn't had cancer, I don't know if I would have chosen a career in social work. In fact, growing up I really wanted to be a doctor. But because I had some fun as an undergraduate in college and my GPA reflected it, I wasn't convinced that I could get into medical school with a B average. So I looked into pharmacy and a few other allied health professions...

...then I was diagnosed with leukemia and all my plans got scuttled like a damaged and sinking battleship.

When I was in remission and back in college classes, I knew medicine or any similar career wouldn't really work for me. So I focused on my true intent, helping other people. I recalled my experiences talking with social workers during and after my cancer treatment and how helpful they were in bolstering my coping skills and garnering resources to address my needs. I came to the conclusion that a graduate program in social work would fit the bill nicely.

As a clinical social worker for 11 years, I got to help lot of people, often in medical settings. At the beginning of my career, I worked with people with HIV and AIDS, undeterred by the death and dying that was a part of the illness before the introduction of antiviral medications in 1995. After all, I had almost died from cancer and had cancer treatment friends who had died. Those experiences taught me how important it was to just be there for someone else, especially when everyone else is scared, turning their backs on you and walking away.

I strove to always be professional and put the interests of my clients before my own. That said, I admit that I learned an awful lot about myself in the process of helping other people. Self-discovery is an inevitable part of using yourself as an instrument of change, support and coping. But to make sure my professional and personal didn't get all mixed up, I was deliberate and careful in choosing not to work professionally with cancer patients, because I wanted to gain some perspective and distance before working in an area so close to my own experiences.

It's ironic that just when I felt like my cancer experience was behind me and I could work in oncology social work, a trip-and-fall on top of my cancer treatment late and long term effects disabled me and took me back to square one.

I am grateful for the time I did get to spend on my social work career. Unfortunately, chronic pain, chronic fatigue and sleep disorders negatively impact my attention span, cognitive abilities and communication skills necessary to be a competent social worker. Simply put, I lack the capacity to engage in this profession at this time. Yet I do so miss it.

So it seems that I have come full circle, back to being an ill person interacting with other ill people once again. And I am happy for the opportunities to be there for my peers. Now I offer little, tiny bits of support to others through my participation in chronic illness communities online and through social media. I have found friends on blogs, Facebook and Twitter and through these interactions I honestly feel connected to other people again.

Always conscientious, I am careful not to present myself as a social worker, because I am not one now. I don't present myself as an expert either because I just don't possess the attention to detail and command of the facts that I think an expert should have. I am more accurately described as a patient blogger, patient expert and a chronic illnessorcancer survivorship advocate today. I am really too tired, too fatigued and in too much pain to be able to be much more than that.

I think my new goal is to become a something of a mentor, supporter and the blogging equivalent of an advice columnist to other people living with chronic, invisible illnesses and long-term cancer survivors. Yup, that's the new me: I'm sharing, caring and baring my soul to help others live their best lives despite chronic illness. Sounds like a new tag line for my blog...

Wednesday, July 14, 2010

It's an understatement to say I like quotes. I love them. If you check my Twitter account, you'll see that I have saved many, many quotes as my favorite tweets.

I just can't get enough of them.

Quotes to me are like candy: bite-sized bits of sweet delight for my brain. They inspired me, console me and push me to be a better person. For me, collecting quotes is like compiling the Cliff Note version of the world's wisdom.

So today I am going to share one of my new favorite quotes which I found as a friend's status message in Facebook. The great thing about this quote in particular is the use of household items as reminders for the message. I can see myself memorizing this quote and actually being reminded of the quote and it's message simply by looking around my bedroom every day.

Now that has the potential to be a great way to start every day!

When I woke up this morning, I asked myself: What are some of the secrets of success in life?

I found the answer right there in my very room.

The Fan said: Be cool. The Roof said: Aim high. The Window said: See the world.The Clock said: Every minute is precious. The Mirror said: Reflect before you act.The Door said: Push hard for your goals.And don't forget, the Carpet said: Kneel down & pray.

~Anonymous

Feed my addiction to quotes! Add your favorite one to this post by leaving me a comment.

Tuesday, July 13, 2010

I should start by saying I am writing this post amidst a pretty big headache. Common sense says I should just come back and do it later, except I am stubborn and want to make sure I keep up with my blogging schedule. Plus Tuesday doesn't really have any "later" time in it since I am going to see the doctor today...

Why do I have a headache?

Seems I spent too much of my energy Sunday. Sure, I got several things done, but I have clearly been paying the price for this Monday. For starters, I woke up really tired. Then I got really frustrated at Robert and would have cussed him out if he hadn't been at bowling last night. Dinner was late because I dropped the marinade for the roast chicken and it splattered all over my clothes, shoes and the floor. Now I have a BIG headache...

So in the end, doing too much on Sunday was not a wise expenditure.

Seems that my energy isn't the only thing I have been saving lately either.

Before I became disabled and unable to work, I had a career and a job. My husband and I were DINKs: dual income, no kids. When it came to making purchases, we never really gave anything a second thought because we were comfortable financially.

That all changed in October 2004. To add insult to injury, all the disability benefits I was supposed to be entitled to through my employer seemed to vanish into thin air. Sure, I get Social Security Disability, but that wasn't supposed to be my sole source of disability income.

That meant that we had to make some big changes in our spending habits.

It hasn't been an easy transition, but it is one that definitely parallels the adjustments I've made to accommodate my physical condition. Yes, it seems that chronic illness has changed me from a spender into a saver. Just one more example of another skill I get to practice courtesy of my current condition.

I have a feeling I'm not the only ChronicBabe that has had to learn to save instead of spend ... which is your cue to share your story with me.

Monday, July 12, 2010

I read today that everything is a non-issue until someone decides otherwise. Which got me thinking about all the worrying I do, which I guess is a form of deciding that something IS an issue. Then I read somewhere else that 89% of what we worry about never comes true. Which got me thinking that all that worrying is just wasted energy, time and life.

The only good news I came across in trying to find the citation for that 89% statistic is that stress and worry plummet after age 50, which seems more relevant to me than I care to admit.

I'm writing this not because I think I worry to much; I am writing this because I think it is an empowering idea to let go and make fewer things issues in my life.

I think a perfect example of this principle in action is the Frontline program I watched over the weekend: The Suicide Tourist. The program follows an American man living in England diagnosed with ALS (Lou Gehrig's disease.) He talks about his impeding death and his plan to travel to Switzerland to end his life before his disease paralyzes and kills him.

If you watch this program, which you can from the PBS Frontline website, perhaps you too will be struck by how Craig Ewert makes his illness and his decision to die all a non-issue. Though the title and the subject matter will perhaps make you take issue with it, Craig seems to transcend his circumstances and make his decision seems matter-of-fact, rational and logical. Although Craig says he is an agnostic, I have to say I admire his faith through the process of weighing his options and deciding to just let go.

After all, ALS will kill him and it is just a matter of time.

Not currently faced with a life-or-death crisis, I think my quest to keep more things in my life non-issues will be more difficult. After all, I'm trudging through the minutiae of daily life which presents me with so many little things that could so easily get under my skin. Plus throw in my chronic illnesses and their effect on my mood and sometimes I appear downright volatile. I need to learn that this is my cue to take a proverbial chill pill.

I'm thinking that if I can master this, I might be left with more time, energy and life to do the things that are truly important to me.

So what about you? Do you think you could resist making non-issues into issues? What benefits could you reap from such an approach to life? Tell me in your comment...

By focusing on things that make us feel better and happier, we are doing something good for our bodies. In a nut shell, feel better, live better.

So why not take a moment and think about some of the things that make you happy; a baby giggling, a new bride dancing with her husband for the first time. Acing a test or bowling a strike. There are so many simple things in life that make us smile and cause us to feel happy.

Focusing on your heart and positive feelings can have a beneficial effect on your mind and body.

HeartMath's Quick Coherence® technique helps you get back to these positive feelings anytime, any where. Using emWave® products with this technique shows you when your heart is responding to these positive emotions.

SPONSORED POST: This post is brought to you by HearthMath, makers of the emWave Personal Stress Reliever. This is a product that I use daily and was recommended to me by my doctor to help me manage my dysautonomia symptoms.

Friday, July 9, 2010

I probably should mention that the monthly blogging theme for July for NaBloPoMo is SAVE. It's been a while since I blogged on a theme, but judging from this week SAVE is an apropos theme for me. I don't know if I have 20 some odd posts that will fit the theme or not, but it's always fun to just write and see what happens.

I find being disabled is practically synonymous with filling out forms, lots and lots of government forms. Inevitably, I feel like I have to prove (over and over again) that yes, I am disabled. More than once I have encountered a question that asks me something like this:

Please describe your typical day, including the activities you engage in and self-care behaviors.

So when faced with this question once again, I decided I needed to write a bit of prose that definitively answered the question, once and for all. Here is my answer:

Every day starts with figuring out how much energy I can expend. I usually have about 2 to 4 hours worth of energy on a good day.

Every activity needs to be broken down into smaller pieces -- 15 minutes at a time, followed by a rest break.

I constantly monitor my pain and fatigue level during the day and sometimes need to put activities off if my symptoms increase.

If I plan to leave the house, which I can do 2 to 3 times a week, I adjust my activities accordingly and include more rest time before and afterwards.

The rest of my awake time is spent in a reclined position watching TV, spending time with my spouse and pets, reading, listening to music or watching DVDs.

Upon reflection, I think this is a pretty solid answer and somewhat akin to my own personal story about spoons or marbles or what ever other currency you image your energy takes. In fact, I think I might have transcended answering a mundane question and arrived at a real, honest-to-goodness personal plan to save my day. And yes, for the most part, I really do follow this plan, mostly because it is the only way I have found to prevent major setbacks from and flare-ups of my fibromyalgia and other pain and fatigue inducing conditions.

What is your plan to save your day? I'd love to hear what you do to manage the limited energy you have each day.

Thursday, July 8, 2010

So yesterday I talked about my fear of death and the "death realization" episodes that seem to occur as I fall asleep. I shared that I had an insight, where I realized that these episode might be the result of my multiple physical health problems and NOT the effects of psychological trauma from my cancer experience. I admitted that I might have put the cart before the horse.

So here is the thing:

I've known for a while that my dysautonomia causes tachycardia or fast heart beating. I've noticed that episodes of fast heart beats happened to me at any time and in any place. That includes when I am in bed. When I started taking a beta-blocker back in 2007, one of the first things I noticed was that I was no longer getting woken up in the middle of the night from tachycardia.

More recently, my doctor prescribed for me the synthetic marijuana drug Cesamet for my fibromyalgia pain. Unfortunately, I was only able to take one dose because of one major side effect: my old nemesis, tachycardia. The drug really helped my muscles relax and made me sleepy, but after what seemed like a few minutes of sleep I awoke with shortness of breath and then realized my heart was pounding.

You see, when your heart is racing, it gets kind of hard to breath. I learned all about this heart rate/shortness of breath connection in the hospital at the end of my failed attempt at Hepatitis C treatment in September, 2007. They actually thought I had had a heart attack because of these symptoms. That hospitalization lead to my doctors starting to treat my dysautonomia symptoms with a beta-blocker.

Granted, I tried Cesamet a few weeks ago, but I guess I needed that time to percolate this insight:

Dysautonomia > since 1988 > a late effect from my cancer treatment (my chronic Hepatitis C infection may also be a co-contributor) = tachycardia at any time or place

Tachycardia (especially when it is bad) = shortness of breath

Fibromyalgia > since 2004 > makes my dysautonomia symptoms worse(interesting factiod: one of the first things my rheumatologist did was send me for a test that definitively diagnosed my dysautonomia, but then he left it unaddressed & untreated)

Sleep apnea > diagnosed in 2006 > an associated condition with fibromyalgiaso now I am forgetting to breath at night = tachycardia

But then here is the missing puzzle piece: dysautonomia, et al. can cause this chain reaction WHILE I AM FALLING ASLEEP.

I don't know how I missed this last little piece, but it fits with the "death realization" episodes I've been having since my cancer experience. The fibromyalgia and sleep apnea are just making everything worse since 2004, which is only reinforcing the whole death phobia thing even more. Oh, and add in that another medication I tried a few months back for my fibromyalgia, Topomax, that actually gave me full blown panic attacks as a side effect, and now I am being reduced to neurotic mess.

Fabulous!

I cannot say this enough: you can't be diagnosed with mental health problems without ruling out all physical problems first. If there are physical problems, the association between the physical and the mental needs to be emphasized: panic symptoms secondary to dysautonomia. In a prefect world, everyone would realize that dismissing real, physical symptoms and labeling them "depression" or "anxiety" ignores my true health problems.

I'm not crazy, I'm sick. For me, knowing this is an instant sanity check. Sure, I might still be afraid of dying, but thanks to finally getting treatment for my dysautonomia and sleep apnea, I won't actually be dying in bed anytime soon.